So today was a day I was not going to live in my limitations, I wasn’t going to let my illness control my day, I didn’t want to be found or tell anyone where I was at, only those that live with a chronic illness want to have what little control left, so before that Kelly your are idiot for doing this, I had to break free if only for a moment. I went for a walk along the river, Steep hill, didn’t bring my cell phone, just wanted to be with me and hoping for a zebra, owl or something to come by. the park looked empty but found out it wasn’t, but I only came across one person that scared the living bejeezus out of me because I couldn’t hear him. Going down the river bank wasn’t fun but getting back was impossible, I decided to take advantage of being stuck and I couldn’t even get a duck to wake up for a photo op. I did find a caterpillar. Yippie, Not even a fish dancing, or a bear doing the hula. but Thank god for tree branches so I could get up, not it was how to I get back to my car, I am a path I don’t know anything about but I followed the train which lead me back to the park. My point is, although a stupid move, I needed to break free for a couple hours, fall in the mud and be lost from civilization. Of course, I am paying now, but here are some photos from my breath of fresh air
Donna BuricaBeautiful pics! Understand completely! Sometimes I try to sneak away myself…usually a bad outcome…but I try again another time. Always bring cell phone…fell bad once. But you gotta do what you gotta do!
Invisible illnesses are just as it sounds invisible, You can’t see them, no obvious symptoms to the naked eye. That being said, living with a invisible illness is the hardest thing I have ever had to do. Not only living with the daily symptoms, but living with the unknown. Will I be able to attend the function on Monday? Will I be able to drive to my Doctor’s appointment on Tuesday? What if I get lost? What if I have a attack? What If I have a drop attack? I always carry my medication with me and a bottle of water as if it were a security blanket. Is it really going to help in this situation? No , but it makes me feel better. I only will allow my self to drive 3 or so miles and I have to feel better than normal to drive, so its not on a regular basis, I have to have some one drive me places, which makes me feel bad. My sensory system is in such overload, lights, patterns on carpets, wallpaper, crazy bright colors really bother me. I can’t handle music even though I am deaf in one ear and going deaf in the other, it causes confusion in my brain. A lot of people in one area cause confusion. You loose friends and your co-workers or family members question your illness? I have never actually wanted anyone to have my disease which is autoimmune disease, Vestibular dysfunction, deafness, fibromyalgsia, extreme fatigue. But at the same time If they could experience it for one day, maybe they would understand. Invisible illnesses are not easy to diagnose or treat and most are not curable, I use to hope this MRI is going to show a tumor that can be removed and I will have my life back and that is just not the case, I am meditating which can be a challenge in itself, with all the noise in my head and spinning, eye pain, ear pain. It’s depressing, but I had to take a new approach to my disease and not let it define me, also had to think of this as a gift! Am I crazy? Yes I look at this as a gift to understand what others are going through and trying to help them through there journey. I know it sounds strange, Yes I wish I was healthy but until a miracle happens I can help others. If any of you are dealing with this world, talk to me, I can try to help you if not support you in your journey.
Watching a loved one suffer is one of the hardest things in the world. It can feel like being trapped in a nightmare. You want to make them to feel better, but you just can’t.
There are many ways to support your loved one, but you need to understand that you are powerless to make them better. It’s not your job to take away their pain. You need to acknowledge this, and truly accept it, before you will ever be able to make difference for them.
Your love and understanding is the medicine they need.
2) Take time to learn about their illness
The first step towards understanding is taking the time to learn about their illness. At the very least, learn the basics. What are the symptoms? What are the treatments? It can be helpful to read the experiences of others.
You won’t be able to make them better, but it’s an empowering step. Having an intellectual understanding goes a long way towards providing effective care. It opens the door to empathy.
Talk to your loved one. Ask them about their experience. Ask them questions if you don’t understand, don’t just guess. It may be hard for them to articulate the answers, but be patient. Really try to understand. Try to put yourself in their shoes.
What might your life look like if the same limitations were suddenly placed on you?
The better you can understand their illness, the better off you’ll be. The love and support you give will be authentic in their eyes.
3) Be with them, but give them space when they need it
One of the best ways to support someone with a chronic illness is to just simply be with them.
Living with a chronic illness can be incredibly lonely. It’s easy to feel disconnected from the world when you are so severely limited. It can be hard to relate to everyone else.
One of the things your loved one needs from you the most is companionship. Never underestimate the power of spending quality time with someone you care about when they are suffering.
Sometimes, just knowing we are not alone in our moment of pain is enough to carry us through.
But the reverse is also true. There will be times when the best thing you can do is to give your loved one space. Getting enough sleep, and rest, is a critical part of managing a chronic illness. There will be times when your loved one needs you, but there will also be times when they need to be alone.
If they don’t have the energy to spend time with you, never hold it against them. It’s not a reflection of some hidden resentment they harbor. In fact, it’s not personal at all. No one would rather stay home in bed. But when you have a chronic illness, you are forced to make hard choices, and it’s so much harder when you feel like you’ve let someone down that you care about.
By giving them space, and not taking it personally, you are supporting them more than you can possibly know.
4) Validate their pain
At the end of the day, what most people with chronic illness so desperately seek is to be heard, to be understood, to be accepted, but above all else, to be validated.
Your loved one lives in a reality where almost no one truly understands what they’re going through. When they are suffering, most people won’t believe them or even care enough to try. But you can be the one who understands. You can be the one who believes. You can’t make them feel better, but you can make them feel heard. Show them that you know their pain is real.
By far, this is the most powerful way you can give your love and support. When they feel neglected by the world, a compassionate validation can give them the strength they need to persevere. In that moment, it can change everything for them.
5) Don’t get frustrated
The worst part of a chronic illness is usually not the illness. Everyone gets sick from time to time. It’s the never ending repetitive nature that makes it so hard. We get sick. Then we get sick again.
At times, it will get frustrating, but it’s so important to remain calm. When your loved one is in pain, they will be at the mercy of forces outside of their control. They may be emotionally needy, or distant, or angry, or sad.
Regardless, it’s safe to say that the interaction may not be as rational as you would expect under normal circumstances. And it’s easy to lose your cool when your good intentions are met with a reaction you didn’t expect. Pain can bring out our worst qualities.
But if you can stay calm, and keep a cool head, the tension will always pass. You will be supporting them in a way that will make their pain easier to endure. At the very least, it will give them one less thing to worry about.
It can be difficult to support your loved one in this way, but it’s worth the effort.
When someone you care about becomes chronically ill, it can force a wedge into the relationship. And if you are unprepared, it can push away the person you are trying to support. But you can bridge the gap if you approach it with the right understanding. It can strengthen the bond, and offers the opportunity for growth, both together and as individuals.
This was written by Mind over meniere’s but can be applied towards any family member with chronic illness. I know myself, I see the frustration of family members, wanting to cure me, fix me and What I have is not curable. So There are times I want to be left alone, sometimes I just need to cry, I hate asking for help, I hate this disease but I also as a patient I have to remember it affects my family as well. Kelly
I have always worked in my life, Proud of being being able to raise my kids and live our life the way we did, we hadn’t gone to Disney land, or drove a fancy car, but we had a home, home made food, nothing out of a box, the boys were in Soccer, Karate, Swimming, cub scouts, and boy scouts, Our house was the neighborhood house, I loved having all the kids at our house, although our house wasn’t 3000 square feet it was home and nice home, and although we couldn’t really vacation , we camped in the back yard and used a tent trailer in the front yard and made up vacations in our imagination, food and house decorations to match the vacation, I worked in the hair business for a while before realizing it wasn’t coming from my heart, so I started working in the medical field, first in the operating room then Labor and delivery then 15 years at a Dr’s office and I loved my job, it didn’t feel like work to me, I was doing what I was meant to do. I believed in everything The Dr I worked for did, I really believed his first interest was the patients. My loyalty will always be there. But my illness took that away from me, how devastating that was to me to give up what I believe was meant to do. But with employers it comes down to, you become a liability, there afraid you are going to make mistakes, although there wasn’t any made. The comments said behind your back about working with a employee with a disability was heart crushing to me, Co workers I thought that were my friends, my family and I came home from work the last 6 months crying every day because of how I was being treated by a particular employee at my job, she made me feel so bad about myself and I was allowing her to make me sicker and sicker and my husband said there is no job worth this. I thought about it and he was right, I was loyal for 15 years and my intention was to retire when the Doctor did, but this particular employee did everything she could to make my life a living hell. The Doctor didn’t want to hear it, so I went to a disability attorney and found out my rights and found out I could sue due to her behavior, her discriminating words not only against me but applicants for jobs, but I didn’t want to hurt the Doctor or the practice or keep the negativity in my life. She was toxic and broken and I couldn’t let her treat me that way anymore, so I left. It was the best decision I ever made. Although I am still sick I don’t have that added stress and toxicity in my life. My job was for the patients, and that’s why they liked me and felt safe with me, they knew I would take care of them. But most patients are on my facebook page and keep in contact. When I run into patients they hug me and tell me how much they miss me and the office isn’t the same with out me. So I know I made a impact and now my heart is to help others with invisible illnesses. So i am still doing my hearts work just in a different way. My support group is awesome and when we share our tears and we share our stories, I know I am on the right road. Kelly
It’s a weird thing for a 28-year-old to have to say, but unfortunately it’s true.
There was a time when productivity was a part of me and I didn’t have to make difficult decisions on how to spend my energy. There was a time when I had energy…
But no longer. Chronic illness changed all the rules. I’m not even playing the same game anymore, but some things remain the same. I still have dreams and aspirations. I still want to be successful and be happy and loved. I can still manage to get work done on my own schedule.
It’s just all so much harder now because I suffer from Meniere’s disease, and Meniere’s, like so many other chronic illnesses, causes a kind of cognitive impairment called brain fog.
In a lot of ways, brain fog is hard to describe, and experiences can vary from one illness to another. But for me, brain fog is a frustrating clouding of consciousness. It makes it hard for me to focus and concentrate, and as a consequence my work and productivity suffers. It also affects my memory. I often forget why I walk into rooms, and I frequently have trouble recalling words.
It is incredibly pervasive problem, too. The number of chronic health conditions that cause brain fog is simply staggering. From autoimmune disorders, Fibromyalgia, Diabetes, Chronic Fatigue Syndrome, and Chronic Pain to Vestibular Disorders, Chronic Migraine, Crohn’s Disease, and Depression, just to name a few. It’s a problem that affects literally hundreds of millions of people around the world.
If you are used to be being a productive person, brain fog will take the wind from your sails. The fuzzy feeling of fatigue and lack of motivation that many people experience can make it nearly impossible to accomplish anything. It can be hard to participate in daily life when your mental energy levels are constantly depleted.
Productivity and illness are two words that clearly don’t belong together, but fortunately, over the years I have found helpful strategies for improving my productivity and getting more work done.
Write it all down:
The first rule of brain fog is to write everything down. In the past, I’ve written about ways to improve your memory. It’s an incredibly helpful practice but also quite difficult. A simpler solution is to just write everything down.
I keep stacks of index cards, pads of Post-it notes, and small notepads all over my house. It can be hard to organize all of the scraps of paper, but I don’t have to worry anymore about forgetting an idea, an appointment, or meeting my responsibilities.
I generally stick to several simple note taking strategies. For random ideas, and general note taking, I use 3”x5” index cards. I find that the small size keeps my notes concise and to the point. It also makes it easy to carry around.
For keeping lists, and doing creativity exercises, I use small notepads. My favorite of which is a product called the “Dotpad” made by the French stationary company, Rhodia.
I also use Post-It notes, though primarily for reminders. If there is something I need to remember, I write it down on a 3”x3” post it note and stick it to the place where I will need to remember something specific. Another good trick I’ve found is to stick post-it notes to the back of my cell phone. I do this with anything important that I need to remember in the near future. I keep a pad of post-it notes next to my bed for this exact reason. If I think of something while brushing my teeth or falling asleep, I immediately write it down and stick it to the back of my cellphone to make sure I remember it, and remember to read it in the morning.
Keep a fixed routine:
One of the most powerful productivity tricks I’ve found is to keep a routine. When a routine becomes a habit through repetition, the brain uses less energy to accomplish task. Through a process known as “chunking”, the brain turns a complex routine into a single chunk of information, allowing us to execute a complicated set of actions on auto pilot. It’s a way for our brains to conserve energy, and it pervades our lives. According to a paper published in 2006 by a Duke University researcher, up to 40% of our daily actions are not conscious decisions we make, but automatically executed habits.
For someone with a chronic illness, you can use this to your advantage. If you follow a fixed daily routine, over time you will have more and more mental energy available to put toward the work you need to do. It will allow you to be more productive.
For me personally, I tend to go to sleep, wake up, exercise, meditate, and eat, at the same times every day. I also have a fixed morning routine. By the time I need to get to work and be productive, I usually haven’t had to make any decisions that day or waste any energy.
Manage priorities and keep an I-did-it list instead of a to-do list:
I sometimes use to-do lists, but on a daily basis, I try to focus more on priority management. On most days I tend to have a lot of relatively unimportant tasks to accomplish, and one or two that are priorities. But because I almost never have the energy to finish everything on my to-do lists, it’s incredibly important for me to know which tasks to focus on first. As long as I can address one priority, I can feel like I’ve accomplished something important for the day.
Also, instead of keeping a to-do list, it’s often far more rewarding to keep an I-did-it list. I find a list of my accomplishments to be a greater motivator then an unfinished to-do list. The latter causes anxiety while the former inspires hope and momentum.
Find your most productive time of day:
You may not realize it, but everyone has a time of day when they are the most productive. For me, it’s after I finish my morning routine, roughly an hour after I wake up. If I have something important to do, I make sure to work on it during this time. On my most challenging days, when my brain fog and fatigue are at their worst, I can often at least get something simple done during this time. My energy has no guarantees, but I am able to get the most important things done by leveraging my most productive time of day. Take time to experiment and find out which time of the day you have the most energy and are most productive.
Get rid of distractions:
This may seem like a simple suggestion, but in reality it’s quite hard to put into practice. With the rise of social media, mobile devices, and web based entertainment, we face more distractions than ever before. For someone with a chronic illness, these distractions can rob us of the little bit of productivity we have left.
When you need to be productive, it takes time and energy to get into the mental space needed to complete a task. Every time you get distracted, you have to start over and re-engage with whatever you’re working on. It’s not always obvious though, and until I started writing, I didn’t realize how much time I was wasting.
For example, while writing this article, I’ve received five emails, two text messages, three phone calls, and four Facebook notifications. And every single one has disrupted my mental flow. Each time, it takes me a while to get back into the zone and sometimes, I never do.
Like many of you, I am addicted to my phone. But when I need to be productive I try to force myself to turn it off. I close my web browser and listen to ambient music to drown out any distracting background noise. It makes a huge difference.
I also try to keep an organized workspace. It may not be as problematic as a smart phone, but a cluttered working environment can be a distraction and a source of stress. I find that when I keep my office clean and organized, I am able to focus better and be more productive.
Stop working and go for a walk:
Sometimes the best way to be productive is to stop working and go for a walk. I get easily overwhelmed when I have a lot of work to do and I’m feeling brain fogged and fatigued. Sometimes I try to just push through it, but that usually makes me feel worse.
When the frustration starts to build, I always go for a walk. There’s something about walking that just seems to stimulate the mind. I find it boosts my creativity, and works incredibly well to reduce brain fog.
Walking is also all that’s needed for your brain to start releasing endorphins, your body’s “feel good” neurochemicals. Ever hear someone refer to a “runner’s high”? They’re talking about endorphins. The release of endorphins causes your stress levels to go down and your feeling of satisfaction to go up. If you are feeling brain fogged, the endorphins released during a nice long walk will help you feel better.
All of these strategies have helped me cope with brain fog and improve my productivity, but I still have not been able to eliminate brain fog from my life, try as I might. I am, however, often able to mitigate it in the moment, and if I can be productive, get my work done, and meet my responsibilities when it matters most, then the end result is ultimately the same.
You can learn to cope with your brain fog, too. No matter what chronic illness or condition you face, you can learn take back your daily life, one minute of focus at a time.